Thursday, April 23, 2009

Sally Satel on Stigma

She talks about a reality TV show I've never seen (one of the many) called How Mad Are You? The premise: ten people, 5 with psychiatric disorders and 5 without are put together for a week and pushed to the brink. Psychiatrists reviewed the tapes and couldn't tell who had psychiatric disorders and who didn't. This is a surprise? Some people are obviously psychiatrically ill-- they behave in disruptive ways, don't attend to their hygiene, respond to stimuli that aren't there (meaning they're obviously hallucinating and responding to those hallucination), but, as Dr. Satel points out, often they are untreated. Or sometimes their treatment has side effects that are visible, such as tremors, or with the older medications, Parkinsonism. This isn't the majority of people with psychiatric illnesses. Go into any gathering of normal-looking people and take a poll: I assure you that some (if not many) of them will have had some type of treatment with either a psychotropic medication or psychotherapy at some point in their lives. People with psychiatric disorders just don't look different from others. And people with a past history of psychiatric disorders are not necessarily fragile human beings--- this is something I tell my patients: when you're better, you're better, you don't need to live a sheltered life and people don't have to protect you from every little stress. Yes, there are some people who are fragile, and some people who need sheltering-- but not everyone.

So Dr. Satel tells us that public service campaigns to destigmatize mental illness don't work. What does work? She writes:

If “How Mad Are You?” improved viewer attitudes, the credit should go to treatment, the most effective destigmatizing force there is.

Imagine poor psychotic souls cowering in doorways, shuffling along in stinking rags or arguing loudly with themselves in the park. No public service announcement will make the public less fearful of them or reassure prospective neighbors when a group home for the mentally ill wants to settle on their block.

Altering public attitudes toward the mentally ill depends largely on whether they receive treatment that works. This, in turn, sets in motion a self-reinforcing momentum: the more that treatment is observed to work, the more it is encouraged.

14 comments:

I gave my reaction to this article in a discussion on The Icarus Project's forum (http://theicarusproject.net/forums/viewtopic.php?p=114678&highlight=#114678). I am just copying/pasting that here:

If an individual is successfully treated, he/she will face less of the stigma of mental illness. However, this doesn't actually take away any of the stigma of mental illness in society, that stigma just isn't applied to that individual because that individual is no longer exhibiting symptoms of mental illness. It is like saying that if all black people wore makeup that successfully disguised them as white people, there would no longer be any racism. Racists are still racist and people who stigmatize the mentally ill will still do so, they will just be fooled into thinking some black people are actually white people and some crazy people are actually sane people.

I think this may actually have the effect of reinforcing the stigma, because the stigmatized population is kind of saying, "yeah, it is okay to stigmatize me, so I will do what I can to avoid being the kind of person you hate." And if successfully treating the mentally ill is the way to erase stigma, does that insinuate that is okay to stigmatize those whose mental illnesses cannot be treated successfully?

When I read the title, "To Fight Stigmas, Start With Treatment", I was expecting the story to go more along the lines of "if we want society as a whole to stop stigmatizing the mentally ill, we have to get the people who treat the mentally ill to stop stigmatizing them first." I think that is actually a better tactic than the one suggested in the article. (Not that there is anything wrong with treating mental illness, but I think it is irrelevant and possibly counter-productive as a way to fight stigma.)

***I was expecting the story to go more along the lines of "if we want society as a whole to stop stigmatizing the mentally ill, we have to get the people who treat the mentally ill to stop stigmatizing them first.***Right. And all we have to do to see that attitudes of a few mental health professionals who read this blog is to look back at the comment section of the post "Should People With Mental Illnesses Hold Public Office?" to see real attitudes of real people such as: 1. "(let's face it, someone who is depressed and feeling suicidal probably should not be president, or fly a plane, or any one of any other possible things..." 2. "So while I certainly understand intellectually that plenty of, for instance, those with bipolar disorder function very well, thank you (and I've treated some of them), that's not the image that comes to mind when I think "bipolar." 3. "90% of people who have a psychotic episode once will have future episodes. Maybe we should be talking more about the 10% who don't."

Perhaps I have misunderstood the program in question. However, the premise of placing undue stress on people with a recognised psychiatric illness for the benefit of television viewers is in my opinion unethical and also in my opinion an abrogation of responsibility by involved clinician. The primary concern should be the health of the patient. I find it difficult to see how this cleared the ethics panel. The use of 'coping' as a means of distinguishing those with and without a psychiatric illness is also in my opinion rather meaningless as mental illnesses are a heterogenous group of conditions which ultimately cause distress to the individual either acutely or chronically through a variety of sometimes subtle mechanisms which are best understood through phenomenology with the significance of any behavioural observations being contingent upon the identified psychopathology. The blanket statement that destigmatising campaigns don't work is in my opinion also incorrect and meaningless. There are various studies that have looked at the effects of stigma campaigns and the effects are quite complex. For example Lincoln and colleagues found that such campaigns had differential effects depending on whether the illness was attributed a 'biogenetic' or psychosocial cause (Lincoln et al, 2008)

I'm standing by the idea that anyone who is actively thinking about killing him/herself should not be flying the plane I'm on. It's not about stigma, it's about survival. When that same pilot is better, he is welcome to fly me to Tahiti, but I want him thinking about the controls, and thinking quickly, I don't want him sitting there thinking "I could crash us all now and it would be over."

Comparing mental illness to race isn't a fair comparison. The mentally ill have become stigmatized because their behavior is troublesome and people misunderstand the course of their illnesses and how much better they can get. Race does not cause behavioral disorganization/chaos. People will always be judged by their behavior and I don't believe you can ever make it that anyone will want to hire (in an equal opportunity way) the gentleman on the street corner who is filthy, malodorous and screaming--whether or not he has a mental illness.

I didn't see the show, my understanding was that being 'pushed' involved mucking a cowshed, not psychological torture. If the show did involve unmonitored torment of anyone, psychiatrically ill or not, then I agree it was unethical. But you can't have it both ways: you can't say that people with mental illnesses can't shovel cow poop because they are too fragile but they should be viewed exactly the same as anyone else. Some of us, however, would not volunteer to go on the show because who wants to shovel cow poo?

I think part of our issue is the semantics of the word "stigma". My concerns with destigmatization are that it creates an environment more open to allowing people to get treatment, and more understanding if people have periods of time where they need a little slack--so you get time off if you're sick with pneumonia, you can take some days off when you're manic as well.

I'm one of the ones that you don't see it on. And I've often said that my one wish that is more heartfelt than not having the illness, is not having the societal stigma.

I saw UK publicity for that show, and I thought I would have liked to go on it (if it wouldn't mean ruining my career) - just to be a role model for others.

I am rotating through psychiatry now (family practice traning) and really enjoying it, yet I feel terribly inauthentic treating bipolar patients ("I know what you mean, it is hard to give up the highs...") while being so secretive myself. It would be like a gay doctor treating a patient with issues about being gay, while playing straight himself.

And I agree with Jessa's comment totally - the symptoms aren't the problem. Society's attitudes are.

When I think about the stigma of mental illness, I do not include recognizing and acknowledging symptoms of mental illness as part of the stigma. I don't think it stigmatizes a mentally ill person to say, "she is dangerous because she is threatening to kill someone." That is something you would say regardless of whether someone is mentally ill or not. When you are judging or discriminating based on someone's actions and mental illness doesn't enter into that judgment, I would not call that stigma. When you say, "she is dangerous because she is threatening to kill someone," it doesn't matter whether she has a mental illness or not, you will still consider her to be dangerous.

I consider stigma to enter the picture when someone says, "she is dangerous because she is mentally ill." Statements like that are based on stereotypes. When people start making assumptions about me based on the diagnosis of mental illness, that is stigma. Many anorexics purge. I was anorexic. That does not mean I ever purged. I did not purge. Even after asking me about it over and over and over, when I was discharged, they still wrote on my paperwork, "decreased purging." That is stigma. If I had purged and they wrote "decreased purging" on my paperwork, that would not have been stigma because it would have been true. If you assume I am lying about purging because all anorexics purge, that is stigma.

It is not stigma to say, "I don't want that pilot to fly my plane because he is currently suicidal," or, "because he is distracted and having trouble concentrating." It is stigma to say, "I don't want that pilot to fly my plane because he has depression." If he has depression AND is suicidal, it is okay for you to not want him to fly your plane, but it is because he is suicidal that is the legitimate, non-stigma reliant, problem.

I don't know if my attempts to describe what I mean by stigma are clear and I certainly don't know if you find them convincing. But I do think it is fair to compare the stigma people with mental illnesses face to the stigma racial minorities face. It is primarily about making assumptions and buying into stereotypes. It is stigma to assume I am not intelligent because I have a mental illness. It is equally stigma to assume that someone is unintelligent because they are African American. Furthermore, it is still stigma to assume someone is unintelligent because they have a mental illness or are African American, even if they actually are unintelligent. It would, however, be valid to assume someone is unintelligent if you have spoken to them and they have seemed unintelligent and if you saw they had a very low IQ score.

Thanks for your reply. I think you are right and I had misunderstood the premise of the program. My earlier comment about people with a psychiatric illness not being exposed to distress meant the following. The label of a psychiatric illness should not be used to make choices about exposing people to 'undue stress' (in the suggested paradigm) as this is exactly the opposite of what these labels were intended for.

On looking at the description of the program in more detail, on the BBC website, as you say the participants were given a number of tasks to perform and the ethical issues are not so apparent.

The program does appear to have reinforced labels however. One half of the participants do not have a 'label' and the other half do. In this instance the 'superlabel' may take on a new meaning (it is now not just bipolar illness but also the 'Group B' label) and there are various studies that show that people behave differently if they are segregated into labelled groups in study paradigms.

You raise some very important points and points which have the potential to be responded to with collective action.1. Firstly should diagnoses be revisited? We usually assume that they are. However it seems very important to distinguish between someone who is in remission without the need for maintenance medication and someone who is in remission but still requiring maintenance medication. I don't wish to generalise here, but sometimes when people in secondary care (psychiatric services) get better, they are transferred to primary care (the GP). So in those situations, the GP would be in a position to make this distinction although it might make more sense for this to be a specialist assessment. Perhaps, a care pathway i.e. a protocol should be created for such circumstances.There is another important though. Having experienced one type of mental illness might be associated with the risk of developing other illnesses and so it can be argued that in the person's best interests the physician needs to consider previous diagnoses.

However this issue of how to distinguish these types of remission should be addressed further but would need to be done at an organisational level (unless the authors of this blog know of any relevant legislation or discussion).

The last issue leads onto the next point

2. Should insurance companies charge a higher premium for people who have had a mental illness. Firstly from the point of view of risk, having one illness may be associated with various other risks. Therefore the insurance companies will do some calculations and work out that they need to charge a higher premium.

This is one very concrete example of people with a mental illness being treated differently because of an illness. I am fortunate enough to work in a health service which is freely available to all and so am not fully conversant with the subtleties of the health insurance programs that are available. However here are a few suggestions bearing in mind my relative ignorance of this subject1. If there is a demand, then perhaps an insurance company that provided affordable insurance to people who have experienced a mental illness might succeed.2. If the insurance companies need to make profit, and to do so need to use various health statistics measures and calculations then changes need to be made further upstream at the level of legislation. The businesses operate for profit and the interests of their shareholders. If legislation is introduced to ensure that the needs of people with mental illnesses, some of whom are at the lowest levels of income, are met then the companies would have to operate within these frameworks. There is probably quite a lot of work in this area that i'm not aware of but it would seem that a combination of professional health bodies and voluntary organisations would be able to arrange for a (recurring) consensus meeting and to lobby for legislative changes supported by a grass roots movement.

"1. Firstly should diagnoses be revisited? We usually assume that they are. However it seems very important to distinguish between someone who is in remission without the need for maintenance medication and someone who is in remission but still requiring maintenance medication."

Hmm, it sounds like you are unintentionally subscribing to what most (not all) psychiatrists feels in that patients never really get over their mental illness diagnosis and will have a relapse at some point.

Most people like me who have tapered off their psych meds consider themselves permanently cured. That is not to say I don't get depressed.

For example, I cried this morning about all the devastation that the psych meds caused me. But I moved on and kept doing what I need to do.

Sorry Justin, remission implies a sense of powerlessness that many people in my position refuse to accept.

"There is another important though. Having experienced one type of mental illness might be associated with the risk of developing other illnesses and so it can be argued that in the person's best interests the physician needs to consider previous diagnoses."

I vehemently disagree as it is the side effects from the meds that are causing these problems. I know someone who was very healthy before taking antipsychotics. Now, this person has diabetes, high cholesterol, and high blood pressure.

There have been law suits regarding the diabetes issue.

"2. Should insurance companies charge a higher premium for people who have had a mental illness. Firstly from the point of view of risk, having one illness may be associated with various other risks. Therefore the insurance companies will do some calculations and work out that they need to charge a higher premium."

Again, it is the drugs that are causing the problems. Think about it Justin, even cancer doesn't cause every condition under the sun that depression has been linked to. It just isn't logical.

But getting back to the point you made, physical illnesses can lead to other conditions but yet people with mental illness are charged higher premiums. So your argument in my opinion doesn't hold up when you look at it this way.

I am not sure I am following your points about insurance companies offering insurance to people with mental illness. Frankly, I wish universal health care would be implemented and the insurance companies would be removed. As long as the profit motive is involved, people with mental illness will continue to have problems with insurance access. Of course, the chances of that happening are slim and none.

Justin, in spite of my disagreements with your positions, I do greatly appreciate the fact that you took the time to write a thoughtful post.

I find Dr. Satel's analysis to be reductionism at its finest. As I understand it, she argues that the stigma of a psychiatric diagnosis attaches to the behavior associated with the diagnosis. Treat the unacceptable behavior and the stigma will disappear.

While elegant in its simplicity, this analysis suffers from one teeny, tiny, yet critical flaw. It ignores reality. In the real world words matter. Labels matter.

My introduction to the stigma associated with the label came approximately two weeks after I first heard the words "bipolar disorder, type 1" applied to me. I was having a business lunch with two professional colleagues with whom I work. Both are high-ranking government officials--political appointees in the state where I live. One of them began to talk about how his son, a police officer working the graveyard shift, frequently had to break up drunken domestic disturbances. The problem, he explained, is "that they're all bipolar." Yep, all of them. He further explained that they "go off their meds" then they drink and become violent. They would be fine, he said "if they'd just stay on their meds." The other one chimed in, exclaiming how she, upon learning that a new acquaintance took lithium, decided that she should "run, not walk, to get away from her" because "she's bipolar" and if she went off her meds she might become violent.

To say I felt like I'd been sucker-punched by Mike Tyson would be an understatement. Because of the circumstances (business lunch) I was not in a position to just walk away. Obviously, they felt it was acceptable to have this conversation. They also apparently felt it was okay to have this conversation in my presence, because in the five years they'd been working with me they'd never seen me exhibit any behavior that would lead them to believe that I have bipolar disorder.

This conversation demonstrates two types of stigma that are not associated with the behavior of any specific person with a psychiatric diagnosis. The gentleman with the police officer son was assuming that people who exhibit violent intoxicated behavior "are bipolar" because that's how he perceives people with bipolar behave. The woman who decided to "run, not walk" to get away from her new acquaintance, based on the fact that she took lithium was assuming that at some point she would go off her meds and become violent. That's her perception of how people with bipolar behave.

As I see it, a significant part of the stigma of a psychiatric diagnosis arises from the label itself, and people's perceptions of what the label means. I once worked for an elected official with a legendary explosive temper, though ordinarily he was a pretty nice guy. People routinely excused his outbursts by saying "that's just Jim being Jim." If he'd had a diagnosis of biplar disorder, people would have said he was "off his meds" and it would have reinforced their view of how such people behave.

Solutions? I really don't have any. It seems that the best solution would be for people with a psychiatric diagnosis to "come out of the closet" as often as possible. Will I come out of the closet on this issue? Nope. I'm too concerned about personal and professional damage I would suffer due to the stigma attached to a diagnosis of bipolar disorder.

Thanks for your reply. I'm sorry to hear about some of your experiences. I agree about an insurance-based healthcare system not being ideal but I note the recent encouraging post on this blog about the insurance related health bill. Your point about remission is very interesting. On the one hand, the doctor may use the term 'remission' cautiously because research produces population data. This is translated into probabilities or likelihood when considering a single person. Thus the doctor may limit themselves to drawing cautious conclusions as long term inferences for an individual may not be warranted from population data and they might use the term remission. On the other hand, for the person the illness has become part of their identity or in other cases they might not want it to be at all. To strive for recovery would involve facing their identity without an illness label. If the label (with it's associated stigma) reinforces behaviour's, beliefs and attitudes and doesn't fit with the person's vision of their identity in recovery then it clashes with the medical perspective of a label which gives access to services designed to improve the person's quality of life and other outcomes. Maybe the word 'recovery' is a meeting point for two 'cultures' (as it has been suggested that each person has their own unique culture). Thank you for these valuable lessons.